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And a Time to DieReview - And a Time to Die
How American Hospitals Shape the End of Life
by Sharon R. Kaufman
Scribner, 2005
Review by Lisa Bellantoni, Ph.D.
Jun 20th 2006 (Volume 10, Issue 25)

Dying is invariably inconvenient: To-do lists sit undone; the dog, while forlorn, is still up to eating in our memory. Then there's the matter of how we die. Dying as we choose has for many Americans become almost synonymous with a "good" death. As medical anthropologist Sharon Kaufman points out, however, "[w]hile many claim to want that elusive "good" death for themselves and their loved ones, they also want -- equally or more strongly -- that their loved ones not die" (4). This irresolvable tension permeates how patients, their families, and medical practitioners navigate the hospital culture. The author spent two years steeped in that culture, investigating why, while most patients reported wanting a controlled and peaceful death, they often endured something quite different.

The problem, she found, was not primarily -- as is often supposed -- that medical practitioners pursued aggressive or heroic life-sustaining measures at all costs. Rather, physicians often hesitated to convey the severity of patients' conditions, and acceded to patient or family wishes in providing care the physicians themselves deemed futile. Conversely, patients and their families often proved either unable or unwilling to make timely choices about withdrawing life-sustaining treatments, choices that "confer[red] upon the decider a perceived responsibility for either "unnaturally" prolonging dying or proactively "causing" death (57).

These challenges structure three distinct pathways that patients may pass through as they move from "sustaining their lives" to "actively dying." Many patients enter the hospital culture claiming to want palliative measures only, care that maintains comfort but does not extend life. At the on-set of a medical crisis, however, an infection or heart attack for example, many patients or their families, through deliberate decision or simple indecision, enter the revolving door pathway. Families in particular may then demand, for example, that patients be resuscitated or their infections treated, even if such treatments extend beyond palliative care into sustaining life. Yet once such interventions begin, as ventilators or antibiotics or feeding tubes are engaged to resolve the immediate "crisis," a variety of economic, legal and social factors conspire to move patients, almost imperceptibly, onto the heroic pathway of aggressive life-sustaining treatment.

At the same time, even those who thought they would refuse "heroic" measures prior to hospitalization may accept or even demand them once admitted; conversely, patients or their families may subsequently resist aggressive treatment, only to find that it extra-ordinarily difficult to say that "enough is enough." Particularly for surrogate decision makers, Kaufman maintains, much futile care "[i]s the result of the connection families make between killing and withdrawing treatments " (175). The extreme of this result is the "zone of indistinction" occupied by those in irreversible, persistent vegetative states (PVS). Here, she cites the nurse-manager of one such zone who says: "My kind of thumbnail position is that the [specialized PVS] unit exists because, for the majority of patients, somebody either made no decision or made the wrong decision at some point in time during treatment" (275).

Indeed, the "zone of indistinction" Kaufman describes -- haunted by patients hovering indefinitely between life and death, sometimes for decades -- might just as well be termed the zone of indecision. Are such "zones" sustaining life or prolonging dying? Kaufman takes no position on such queries, both as a matter of methodological commitment -- her task is to describe, not to evaluate -- and because, like many of her interviewees, she is ambivalent about anyone's ability to exercise autonomy or choice in the hospital culture she describes. For Kaufman, these zones arise amid the hospital system not only because it is extra-ordinarily difficult to stop "heroic" measures one begun, but also because "Death has entered the domain of choice, and today we inescapably think of death in terms of its control, quality and timeliness" (326).

Yet, if death has entered a domain of choice, why are patients so often dying in ways they do not wish? The salience of Kaufman's book -- comprised primarily of case studies, interviews and observations -- resides in its detailed chronicles of how we die now, amid an ebb and flow of treatment decisions and indecisions as dying becomes less avoidable. The ostensible problem she identifies initially is our fear of dying in ways we would not choose. Yet her evidence indicates that many of us do not wish to be agents in authorizing our own dying or that of others (314). Moreover, even if we do wish to exercise such autonomy, we often don't know what we want -- or should want -- or will want -- even as the choices we must make become ever more pressing. Indeed, as the extended case studies that make up the bulk of chapter six suggest, many of the choices that arise in such contexts are finally orphaned, decided by institutional bureaucracy or default because no one wishes to take responsibility for them (219-36).

That last point underscores this books tremendous value both to advocates of patient self-determination, and to those charged with helping patients and families make end-of-life choices. Precisely on that count, however, this book may prove its greatest worth to a much broader audience. Its descriptive aim and largely narrative format make it readily accessible, and the few technical terms introduced are well defined. Its enduring strength, however, is the life and voice and shape it lends to how we die from the inside, i.e. within a hospital culture that so often thwarts -- with our full cooperation -- what we claim we value most in dying. Kaufman offers no direct guidance in how to secure a "good" death. Yet her account is invaluable in identifying what we do -- by decision and indecision -- to all but guarantee that we will die precisely as we claim we most fear. On that count alone, this book merits reading by anyone touched by the hospital culture she describes, which is very likely all of us.

 

2006 Lisa Bellantoni

 

Lisa Bellantoni is an Assistant Professor of Philosophy at Albright College. She teaches normative and applied ethics with an emphasis on emerging technologies. She is the author of Moral Progress (SUNY, 2000) and several articles on bioethics, and welcomes correspondence at Swamper99@aol.com.


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